Havyn had chemo on Tuesday and did fantastic. She had a bunch of cheerleaders this time. Emma Catherine, who has been helping me during camp with the kids, Henry, Amelia, Arlie, Daddy and Mommy. After chemo we headed to Kentucky Kingdom for a few hrs to give Havyn time to enjoy the water park!!
This morning Havyn had counts at the clinic in Louisville. She asked for Arlie to come with her and hold her hand. He was happy to come along. We were bummed to hear that her counts were low. However, they are running consistent with how they usually run at this point in her chemo cycle. She has this week and next week off from chemo so that will give her a break and time to get those counts back up!
We had an early morning dropping off Arlie to Mrs.Linda’s, Henry and Amelia to The O’Neals and Emma Catherine to her house. We are blessed to just be focused on Havyn today. Once we got to Cincy the first thing on the schedule was an x-ray of her spine. After that we headed to pre- op where we learned that the Doctor was running an hr behind. We rested as we waited. Finally Rachel the OR nurse came to get Havyn ready for transport. Havyn was sharing her knock knock jokes with Rachel as we waited to see Dr. Sturm. Once he came in we discussed the cast being too tight the last time and he assured us that he would make it looser this time. Yay! As Rachel wheeled Havyn through the maze to get back to the MRI room Steve and I walked behind her. She is a brave little girl!! We got her on the MRI table said our goodbyes and kissed her as they held a strawberry flavored gas mask over her face. We assured her that we were right there and encouraged her to go on to sleep. She did great! The MRI is over and she is in getting cast #3 as I am writing this post. Bless her heart she has had to go without food all day. She is amazing though. She has asked about a half a dozen times about eating but hasn’t once complained about not being able to eat. We will be hitting up Cracker Barrell for pancakes after this!!!
There are few words to describe the feeling of knowing that your baby girls freedom is about to be taken away. The feeling of wanting to hold her as long as you can because the next time you see her she will be in a cast. Its a longing to be close to her and not able to be. The feeling of a hard cast between your embrace is heartbreaking. It brings to thought how God must feel about us sometimes. A Father longing for a child’s embrace but instead of intimacy he gets a hard heart. As a momma wanting so badly to just be close to my baby right now, I just can’t imagine how it grieves our Father’s heart to long to be close to us but we push him away. Whatever it may be that is keeping us from allowing the Father the intimacy he desires, I pray that we would be people of freedom. A type of freedom that would allow him to break through the hardness and get close to our hearts in a way that brings joy, peace and rest. Just a thought on this day as we sit in the waiting room waiting to see our newly casted baby girl!!!
On a fun note, we’ve been living the camp life for a week now. We are at Country Lake Christian Retreat in Indiana. Steve is one of the deans for Elementary camp for Southeast Christian Church. Being at camp each summer is one of the highlights of our whole year. There are so many reasons why we love being there!!! This year for us it is a bit different as we are staying in a different place. We are in the old lodge with lots of space and a huge back porch full of rocking chairs that overlooks the lake. It has been my sanctuary for a week now and I cannot tell you how much I have enjoyed being away from the normal. The staff has taken amazing care of us!! They have fed us and let us swim as much as we have wanted. Always asking how they can help! It has been a real retreat this year. Really sad to think we are only there for a few more days!!
UPDATE- we just saw Dr. Sturm and Havyn is out of OR. He said she did great. As for the spine x-ray, he said nothing has changed. As disappointing as this is, we are grateful that there isn’t more progression. He reminded us that this cast with her NF-1 diagnosis isn’t a corrective cast, it is more to hold her curve from getting worse. Praising God for getting her through this procedure. We are still waiting to see her!
After this week we will be home for a few days to repack and head to Michigan to see Steve’s family. Then back to school, celebrate Steve’s 40th birthday and the end of Havyn’s chemo journey!!!
Thanks to each of you for your prayers, support, encouragement and love through this journey. We cannot say thank you enough!!!
Tammy and Steve, you are the real deal. Your words reach to the very center of my heart. God finds you faithful. I pray that I might be more faithful. Your sweet Hayvn is a light in the darkness. I pray God will honor your faithfulness to Him and give you peace that passeth understanding each time that you need it. I love that Haven wanted Arlie with her! He is already being a protective brother. Tooooooo sweeeeeet!!!!!!!
Tammy, your insight to the cast keeping you from holding Havyn closely and what the Father must feel when one of his children harden’s their heart is so on target. Wow how you are so in touch with the Holy Spirit. Thank you for allowing us to be a part of your family’s very unique and difficult journey. Please know we are all out here praying for each of you. Havyn is so fortunate to have you and Steve as parents. No child should have anything less when going through a valley such as this. We love you all!
The Queen team
Praying daily for Havyn & her beautiful family.
Praying for healing, blessing, strength, peace & lots of joy.
I continue to be flat amazed at the heart and spirit of this little one (not to mention that of her mom & dad!!) After all she has been through, she still has that huge infectious smile & “roll with it” attitude! So happy you all were able to have a great week at camp! Continued prayers for you & your little Warrior!! The Peays love all of you so much!! ♥ ♥ ♥